Families are facing increased pressure to provide care to their terminally-ill or dying kin in the home. It is known that balancing care with other personal and social roles can adversely affect family caregivers' (FCGs) health, yet access to supportive services which can mitigate burden is often inadequate. Cultural factors are known to shape the experience of caregiving; however, most research to date tends to neglect the experiences of FCGs from different cultural groups. This understanding is necessary to ensure that supportive services are both meaningful and culturally-appropriate. Using qualitative methods, we undertook longitudinal research with a sample of Dutch Reformed FCGs (n = 5) to understand their experiences of caregiving and bereavement. The results of the study are suggestive of a cultural specificity with respect to caregiving that impacts both responsibilities and reactions to care. Three themes were salient to this group as a cultural entity: cultural attitudes towards care, religious beliefs and coping, and culturally-informed care-seeking behaviours. These three themes were seen to be a function of their religious and ethnic identities and were reinforced by ties to the communities in which they resided. Cultural identity provided a framework through which to understand and make sense of the experience, while group membership provided access to networks of informal support. This research contributes to the geographical literature on care/caregiving by providing insight into the social, cultural and religious context of informal family caregiving with a population who live in close geographic proximity. On a practical level, this case study indicates the importance of considering how these factors may operate in other settings in order to implement timely and appropriate interventions to better support FCGs who are caring for their terminally-ill loved-ones at home.
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http://dx.doi.org/10.1016/j.socscimed.2010.10.010 | DOI Listing |
BMJ Open
January 2025
Department of Community Medicine and Family Medicine, All India Institute of Medical Sciences, Bhubaneswar, Odisha, India.
Background: The avoidable causes of infant mortality should be identified, and interventions should be made to improve the infant mortality rate. The cause of infant deaths should be assessed in both medical and social contexts.
Objectives: We aimed to determine the medical causes of infant mortality by verbal autopsy and its determinants in two rural blocks of the Khordha district of Odisha and assess the pathway of care and delay in seeking care for the illness preceding infant death using the three-delay model.
BMJ Glob Health
January 2025
Sickle Cell Programme, Department of Haematology and Blood Transfusion, Muhimbili University of Health and Allied Sciences, Dar es Salaam, Tanzania.
Despite progress in healthcare services for individuals living with sickle cell disease (SCD) in Africa, substantial gaps remain in advanced treatments for SCD. To help address this burden, Tanzania has established one of the largest single-centre SCD programmes in the world and developed an advanced therapy programme for SCD focused on patient engagement and advocacy, clinical activities involving exchange blood transfusion (ExBT) and haematopoietic stem cell transplant (HSCT), gene therapy (GT) preparedness, and enabling partnerships. This report describes the programme's genesis, structure and progress achieved.
View Article and Find Full Text PDFJMIR Form Res
January 2025
Department of Design Innovation, College of Design, University of Minnesota, Twin Cities, Minneapolis, MN, United States.
Background: Congenital heart disease (CHD) is a birth defect of the heart that requires long-term care and often leads to additional health complications. Effective educational strategies are essential for improving health literacy and care outcomes. Despite affecting around 40,000 children annually in the United States, there is a gap in understanding children's health literacy, parental educational burdens, and the efficiency of health care providers in delivering education.
View Article and Find Full Text PDFEffective communication is crucial in pediatric palliative care and is essential to facilitate shared decision making between families and the health care team. This study explored the communication preferences of caregivers and health care specialists in Central-Eastern Europe, a region with unique cultural and health care dynamics. Through qualitative interviews, key communication style preferences and barriers were identified.
View Article and Find Full Text PDFAustralas J Ageing
March 2025
Department of Geriatric Medicine, Austin Health, Heidelberg, Victoria, Australia.
Objectives: Residential aged care respite clients are vulnerable and prone to poor health-care outcomes. Improvements in the quality of care for this cohort are urgently needed. However, before proposing changes in care models, a nuanced understanding of relevant issues affecting respite care consumers and professionals is required.
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